Ramblings from a regretfully by-the-rules domestic goddess who once fancied herself a fearless rebel.

Thursday, March 18, 2010

How Much Is Enough?

It's been rough around here again. Damn. I hate even typing that. I totally get whining mother of the past two years.
I almost blogged last night after a very raw and real, holy-shit-I'm-losing-it, kind of evening that ended with a giant bowl of Ben & Jerry's Half Baked ice cream. (Thank you, Ben & Jerry. It was just what the doctor ordered!)
M has been a stimmy mess. And the stims are vocal. And they are LOUD. So basically his entire time at home, post-school, is spent flapping his arms, pacing around the room, and escalating his voice with total gibberish and the occasional recognizable word. (His latest is 'Tunnnnnellll!' a word we always all yell when passing through a tunnel)
I wish I could blame all of this frustrating behavior on gluten infractions (M has been gluten-free for two years) and have them magically disappear once the gluten is out of his system, but let's face it, gluten or not, he is still...severely autistic.

But here's the frustrating and confusing thing about the gluten...it's been B's 'fault' the past two days that M has eaten gluten. We've entered a little phase whereby B does not sit through an entire meal without getting up multiple times. I have to admit that this does not set well with me. I am a firm believer in sitting at the table until your done. I know that I'm going to have to instill this in him a bit more by actually taking his food when he leaves the table. It's not really fair to blame a three-year-old for his brother's issues, which makes me feel really terrible when I tell him to please pay attention when he's got bread or pasta on his plate. How the hell is he supposed to remember that sort of stuff?

And onto food in general...the food obsession thing has gotten OUT.OF.CONTROL. Not only does M spend his time fidgeting and vocally stimming when he is home, he also spends it hunting for food. I have to know where he is at all times because if I don't, I'll likely find him taking a bite out of a tomato (which he doesn't like) or biting into a banana peel or even an onion. I'm at a loss as to where to store my non-refrigerated fruits and veggies so that they are out of his reach. The boy is crafty. And if I make myself something to eat and turn my back for a second, or go to get a glass of water to go with it, I will inevitably turn around and have missed M in stealth mode, sticking his fingers in it about to take a bite.

Cooking is no longer a fun or relaxing thing to do. I spend way too much time herding him away from things I have just chopped, and worse, from sticking his hands into pans on top of the stove. He never used to do this!! What the hell is going on?

I know that this concern over gluten infractions is why doctors and nutritionists suggest that an entire family go on the diet together. I get it, I really do. I also know that it would probably be very beneficial for all of us to be gluten-free.
But you know what? I'm fucking tired of it. I'm tired of doing a thing that I don't see 'wow-me' results from. Yes, he turns into a hyperactive maniac when he gets a bit of gluten accidentally. BUT HE IS STILL SEVERELY AUTISTIC. Yes, his poop is more formed since we started the diet. BUT HE HAS SINCE REGRESSED TO BECOME SEVERELY AUTISTIC.

And then there are the supplements. I am a big believer in vitamins, always have been. Blood tests have shown me that M is low on iron, calcium, magnesium and vitamin D...this part is not hocus pocus, it is medically there in front of me to see as necessary. But you know what...even if I try to bolster all of those things that the lab tests show me he is lacking...wait for it...HE'S STILL SEVERELY AUTISTIC.

When we were on the plane home from Kauai I lost my cell phone for a bit. It turns out, I'd set it on my chair next to M and then gotten up to grab something for B. M had grabbed the phone and somehow hid it (not intentionally) underneath him. I was so worried that I'd lost the thing that the other half even had the flight attendant come over with a flashlight. The attendant asked me to tell her when I found it, so I did. It's hard to explain why your child didn't just tell you he had your phone, so I briefly explained the situation by saying that my son is 'non-verbal.' Afterward, the other half looked at me a bit offended and said, 'M isn't non-verbal! He talks!' It hurt my heart because I know that this is what he wants to believe, and here I am getting into that 'realistic' stage with him still lagging just behind me. M does not express his needs. Yes, there are a few recognizable words, but you know what? HE IS NON-VERBAL!

Clearly all of this has me worked up. I want so desperately to help my beautiful child and to bring him more into my world. It makes me feel horrid that our afternoons are spent annoyed at him and on edge because there is never a second without movement or sound. (funny...I just typed that and he is actually sitting still with his chew tube, barely making a sound right now. Oh, wait...never mind. There he goes again! I swear, that really just happened that way!)
And poor B, the world's most compassionate and patient child has even started to get bothered by M's sounds. He actually said to him the other day, 'M! Stop making your sounds! You need to say things like I want to play with you, or be my friend!' I told him he was breaking my heart--and he was--but being the funny boy he is, now every time he tells M to say real words he immediately turns to me and says, 'Am I breaking your heart, Mom?' Oh, that boy....!

Our Dan! doctor wants us to try an elimination diet next. He is without answers too and freely admits that our next step may need to be medication. Though I was at first open to the idea of an elimination diet, I am now at the point of saying, 'screw it.' Screw the diet. Screw the vitamins. Screw the no-prescribed-medications belief. We're all a bit miserable in each other's company at present, and this is just no way for a family to live.

I'll shut up now...and I may even get myself some more Half Baked ice cream.

My little girl has recently started getting into all sorts of things that she never did before, too. When I took a step back to look at it more objectively, I realized that she is actually noticing her environment. She never had before...most kids half her age would be doing this stuff, but she never did because it didn't occur to her that it was even there.

Not saying that this is what's going on with M, but I hope it's something like that. I was so happy to find that she was finally paying attention to some of the things around her.

Oh, and the produce thing totally jumped out at me. Have you tried those wire hanging baskets? I have one above my sink where I keep all of our non-refrigerated produce, and so far it's been a lifesaver (knock on wood!).

It's really really okay to say and feel all these things! Not to mention totally normal!! Universal!! Please don't think you're a whiner. You are obviously such a loving mother who tries SO hard!!! I think that aside from what your kiddo is going through, you are also going through a phase of how you look at autism. If you want to talk, please shoot me an email, susan@susansenator.com A lot of what you say resonates with me.

As Susan said, you're not a whiner, or at least, if you are, then I'm one too. I understand everything you said and we're also having a hard time keeping our chins up here. Our guy's private school just told us they aren't equipped to deal with him and they recommend the public school for him next year. He's a stimmy mess these days too and I keep considering the SCD diet in addition to the gfcf that we've been doing, then I'm like "fuck it" as well. I wish you and I could just go grab a beer together, it'd be nice to chill with someone who gets it.

I don't think you are whining at all! I think you are passionate, honest, and being real. I am in awe of you and all you feel and go through. From a reader's perspective your post was inspiring, raw, and so emotional.Thank you for sharing.

Deb - you know I top the list of your biggest Mom fans - and this post is, like the other posters have said, very real. Real from many perspectives. I too am in awe of you and all that you do to keep your sanity. And guess what? Even those of us with less impaired kids have moments like you describe. Like the one last night for us where we had friends over and C kept stimming his lego-block-created "robot" at them and couldn't understand why they wanted to play Geo Trax trains instead. They finally gave up on him or he on them, he went into our inflatable chair, and the played Geo Trax. And I cried. A good time was had by all. :)You know I just love you to death -for what that's worth.

Thanks to all of you for your support after my slight blow up :)Can I go have a beer with each and every one of you...for a year?!And, Susan, I will most definitely email you soon. Thank you for the offer.

Your descriptions of your son's obsessive hunt for food is identical to that described by Charlotte Moore in her book about her two autistic sons, "George and Sam."The similarity is eerie and, as I recall, one of her sons had a narcotic-like reaction to a number of foods that caused him to become in turns sluggish and frenzied, as the food/drug effect wore off.If you haven't read her book, I highly recommend it. She describes a diet that worked well for her more severely autistic son.You're probably sick of well-intentioned advice ad I'm not a parent of an autistic child, buy I used to teach autistic teens and I know a little bit about the subject. It might not hurt to check Moore's book out if you haven't done so already.

Thank you for the book recommendation. I'm always learning, so I'm happy to get advice wherever I can. And parent of a child on the spectrum or not, this whole autism thing is a fly-by-the-seat-of-your-pants experience for the most part, so we're all on fairly equal ground when it comes to expertise :)

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About Me

I'm a Mom, a wife, a one time caretaker to Fillmore the wonder dog, and once upon a time I was a pretty cool all around person. I like nice people. I don't like mean people. I like music. I like shopping. I like nature. I currently am putting too much pressure on my remaining brain cell to type sentences that have more than one noun, verb and direct object. That is all.